Saturday, November 28, 2009

Hi everyone (and Hi Elaine..glad you got things working!!) I wanted to tell you about a parenting / behaviour management course I have recently attended. It's called 1-2-3 Magic and is run in Busselton very frequently by The Goodnight Nurse. I couldnt find a direct mention of the course on her website, but just contact Emma if you are interested. It costs $100 per person, or $150 for 2 people. I also recommend buying the book for an extra $40. Anyway, about the course...

....Emma had told me that it was proven to work with autistic kids, maybe not the really low functioning ones, but definitely the others. I was a bit hesitant at first, but went along anyway, as I thought that it could at least help my husband and I manage our non-autistic child's behaviour. Well...guess what...it works....with both the kids. Thomas (non autistic) is much happier and more co-operative and less angry and grumpy with us. Jamie (ASD) is getting through his meltdowns and anger times a lot quicker.

There are 3 parts to the course. 1 - identifying and sorting behaviours - this really helped me to see which behaviours were important to target and which I could "let slide". 2 - Using 123 to stop unwanted behaviours and start wanted behaviours (the whole thing sounded to simple to me, I was sure it wouldn't work, but it did!!) and 3 - emotion coaching - to help kids identify, manage and deal appropriately with their emotions - this has really worked with Jamie. He has had a few meltdowns since the course and I have been able to bring him out of them quicker and with much less trauma than previously.

Friday, November 27, 2009

Hi everyone, yes I have it worked out. Thanks Amanda! I'm Elaine, mother of 4; 3 girls and my special boy. Kyle is 7 and was diagnosed with Autism in May this year after many frustrating years of being blamed for bad parenting. I have a very supportive husband in Troy. Kyle is high functioning but has many aggresive meltdowns and his behaviour is becoming more obvious around and by other kids. He attends a school in Bunbury which belongs to our church so he is well supported. There is only 59 students and 3 teachers so the all the staff is on board with anything going on for him. We are up to the stage of telling the other students but are unsure yet how we are going to go about it because Kyle although he knows his diagnosis doesn't like to talk about it. Any ideas? Thanks for the coffee morning it's good to meet other parents because as much as they try to, family and friends sometimes don't fully understand.

Best wishes to you all especially as we start heading to the busy time of the year and for us the hardest time of the year, with all the out of routine activities that are involved.

Thursday, November 26, 2009

I just wanted to share with you how brilliant I am finding my weekly sessions of Pilates (twice weekly if I'm feeling indulgent & can get child care/creche lol!)

For those of you who dont know me, I definately DONT enjoy excercise, and definately dont run, jog, pump or lift stuff unless required!! So I am far from a fitness nut, but have to say how noticable the benifits have been since starting a few months ago.

Yes, there has been a little toning and weight loss...but that isn't the main benifit. It's the hour of complete, selfish, centering time all to myself, there is plently of stretching, core-work (great for post-bubbie stuff) and strengthening exercises, but the last 5 or so minutes of relaxation, with a lavender pillow on my eyes and the instructors soothing voice encouraging every mussel to relax, recharge and breathing deeply to release stress, is more benificial than anything I've ever done!

The class I attend is a great mix of people from their 20's to their 70's all shapes and sizes, and everyone keeps comming back! There are several types of pilates around, some use fitballs and scary looking exquipment, but this is just floorwork (kinda like yoga)

I'm in Dunsborough, but have asked my instructor to get back to me with details of similar classes in Busselton & Margaret River if anyone is keen to give it a go! Will post those details when I hear from her.

Today was especially brilliant, as we'd had one one 'those' mornings...Griffin winging and screaming at me from the moment he woke, and Grace melting down over the velcro on her shoes! It felt like an hour long hug from a good friend, giving me time to regroup and get back on track for the day. Im pretty sure it would have spiraled if Id not gone to class.....so its looking like a good day now :)

Just a quick thanks to everyone who came along yesterday, it was great to see 3 new faces and several old ones too :) I hope everyone is getting as much out of this as I am! I find meeting up with you all even just once a month so supportive & energises me to face the world once more.

Hopefully we will have another get-together before the end of the year. Perhaps an all-in BBQ with the kids and family.....then we have someone to turn the snaggs! Will figure out a date and give you all as much notice as possible, I know how busy it's becoming with all the end of year shindigs!

I came back from a lovely meeting at the park to the potential for something nasty to be going on with my Dads health and I remember when I was faced with having to explain to my children about death and dying when my Grandmother was very ill and looked like she was going to die.

Sometimes our kids dont register or express emotions the same way others do and at times can come across as incredibly callous and hard. I have heard of asd kids laughing at talk of death simply because they dont understand why everyone is upset. It can be worth explaining to the kids what is appropriate behaviour and what is not.

For my kids I have given them free access to any animal documentary that was on show and so sex, breeding and death have always been an acceptable topic of conversation to the consternation of others at times I am sure.

Everyone has their own ideas of what they should tell their children but just remember where our kids are coming from. They dont understand round about hidden discussions and need everything laid out in black and white saying Grandma has gone to heaven to live with god was never going to cut it with them.

Their first introduction to death was the death of dearly loved pet mice, then Grandma. And it seemed like she sort of fell off the planet and out of their minds, not long after my beautiful dog who had been there their entire lives had to be put to sleep due to heart problems. My son was a little quiet about it. I think said he would miss him and that was all. But as the years went by every now and again out would pop a little comment that showed how much our loved animals and family were missed and the memories shared together to laugh and chuckle over.

Sometimes our kids grieve more it seems for their favourite toy then for people. But the favourite toy doesn't get talked about years later.

Such a morbid topic. sorry about that but sometimes it is worth having a look at these topics to decide what it is you would like to say to your children. If you are grieveing you wont have the mind power to make a lot of sense in your choices. It can be worth thinking about this one.

My kids and I have talked about death, who would look after them if I died and the issues of organ donation. Kind of like my umbrella policy. If you take it it nevers rains. I hope if we talk about it it is something that wont ever be needed at least not for a long long time.

Sunday, November 22, 2009

There is a workshop being held in Bunbury next month. Its mainly aimed at families new to ASD, here is the link which takes you directly to the dates, click on 'Home' for all the information about Early Days.www.earlydays.net.au/workshops/search.html

Saturday, November 21, 2009

For me the greatest challenge in living with ASD in the family has always been the one track mind and inability to see any other solution or point of view.

You know the times when they are stuck on one way of doing something and it is enough to trigger a meltdown if you try and get them to see another solution. Or the times when they are trying to do something but their approach is not working and they simply cant change tack to try something else.

Tony Attwood describes an average brain as if thoughts were four wheel drive vehicles and if the person strikes an obstacle there is the ability to forge a new track or action or way of thinking to enable a solution to be found. Yet the ASD mind he described as a train on a track and if an obstacle occurs it leds to a great big train wreck (Meltdown) the rest of the day is ruined for the child and their carers as we struggle to comprehend why the bomb blast went off over something so simple that could not be seen or understood by the child who is trying so hard (too hard?).

Things like unexpected changes of plan, trying to find solutions for unexpected problems, the little things that drop into your lap and force a change in action or thoughts make life incredibly hard for our kids.

So is there a solution? Yes. You can teach your child flexible thinking. It is not easy. Takes a great deal of practise and small steps at a time but by teaching the skills of flexible thinking you are building more traintracks to be built that allow a change in direction, thinking and imagination.

Tony suggested a game called "What else". It's an easy game. You can play it anywhere any time, driving in the car, going to bed, at breakfast. Do it often and in little bits and watch their minds grow and their flexibility increase. The side effect of reduced meltdowns is wonderful to behold.

Tony's suggestion was to take an object and think of all the things it could possibly be. Take for example a house brick.

What is it? It is used to make buildings.What else could it be or do?

Now an Aspie/auti's brain will likely say it could build a house, library, fire station.

A Neurotypical brain might say it could be a paperweight, a measure of weight of other things, a door stop, a boot scraper, a wheel chock for wheel changing, ballast in a boat, the basis for a book case, and so on.

When playing this game with your child dont push too hard. Allow the child to come up with as many or as few ideas as they have available and then add on one or two extras when they have wracked their brains. Those additional things can be really wacky and way out they dont have to be serious. The funner the better really anything that gets a laugh happening.

Other ways of teaching creative thinking can be found at your local book shop. Edward De Bono is an education specialist who has books published on how to teach creative thinking. Worth getting hold of a copy and having a look to see what you can do to teach this more flexible way of thinking. It will have such an impact in improving your childs thinking.

Dont make it a chore. You dont have to teach flexible thinking in 2 days. You have all the years it takes to teach this skill but what you will notice is that the child starts to come up with solutions for themselves instead of getting stressed and even more rigid in their thinking.

Oh and when you hit those tuff days when the lack of flexibility is causing grief to you and yours hang in there. It wont be this bad forever.

Tuesday, November 17, 2009

some people agonise over when they should tell their child their diagnosis.

I guess in some ways I had it easier because my kids were pretty grown up (Almost 10 ) when they were diagnosed. So we got the answer, I found some excellent books and we shared the diagnosis together.

Some psych's are emphatic that they be the ones to tell the child to ensure it is done with dignity/tact and respect. I guess I am a bull at a gate. I just found Cathy Hoopmans book Of Mice and Aliens and read it with my kids. They identified with the boy and decided that they had AS as well. Tony Attwood has a wonderful way he shares the diagnosis with the family that he described in the last seminar I went to in Perth.

For me giving them the answers straight away was the right thing for us. I know that others find it a real concern.

My lad thought he was crazy and that there was something wrong with him. He had a number of times mentioned that he wanted to kill himself. For him it was a relief to find out that there are others who think the same as him. That he was not the only one to have the same challenges and the same skills. The threats of selfharm stopped once he knew about ASD.

However I know of a family who decided that their child was not ready to have the diagnosis told to the child. As is their right they made their decision based on their knowledge of their child. Instead the teachers and teachers assistants were informed and it was explained that the child did not know.

HOWEVER another parent in the school were informed by staff that this child (mentioned by name and pointed out in the playground) had a diagnosis and what it was. This was mentioned by a number of staff, not just one. It was suggested to an undiagnosed family that they contact the diagnosed child's family and discuss ASD with them. This was a severe breach of confidentiality and should never have occured but it did. And the potential for harm from that was major. What if the school yard bully had been standing close enough to overhear the conversation? Can you imagine the pain of being told you have ASD by a nasty child in the playground? And what if the recipient of the knowedge had an unknown axe to grind?

You do need to be very selective about who you tell and when is the right time to tell. There have been people I have told and others I have not bothered about. But for me the most important thing was to make sure the kids knew before outsiders did. It can be done with love and acceptance and in such a way that it is simply part of who they are. Seek guidance if you are unsure, but dont let your child find out from the wrong people.

If you dont think your child is ready to share the diagnosis then make sure the people who do know are aware of the severity of breaching confidentiality.

I have read so many that I forget all the names however the ones that stand out.

Anything by Tony Attwood. He is such a positive writer.

For kids anything by Kathy Hoopman. I used her books to share the kids diagnosis with them.

For learning about children with language/possible intellectual delays try "Lucy's Story" by Lucy Blackman. It is an inspirational book and taught me such a lot. I strongly recommend this one to anyone.

for help with problems at school try "Asperger's syndrome a practicle guide to school success." by Dianne Adreon and Brenda Smith Miles. while it targets the teen eyars there is such a lot in there that would be easily addaptable for primary kids. I bought it for my childs school. anything by Brenda Smith Myles would be useful for school issues.

For school issues and your legal rights try the Disability Standards of Education 2005. it is a useful document that can help clarify just what it is the school is supposed to do to help your children.

for joy, laughter, tears and a bit of escape "Winterdance the fine madness of the iditarod race" by Gary Paulsen also he wrote The Schernoff Discoveries (1997) definately worth reading(about a boy with ASD funnily enough) but another alltime favourite of his is Harris and Me. roll on the floor funny.

Hope you find a few of them. I still go hunting for the Gary Paulsen books when I need a cheer up.

Have just cut n pasted this from an email from Amanda, thanks hun, what a clever chook you are :)

"The blog is very easy to get into.

Go to the blog site ( ETA ...if you are reading this - you have already done this lol!)

Click on sign in at the top right of the toolbar

Put in your username / email and password at the top of the page

You should get directed to a page that has a box with the title “manage blogs” , simply click on “new post”

On the next page type in your title and then what you want to say in the larger box, then click on publish post (big orange box)

On the next screen, near the top of all the words is a link “view blog” – go there to see your post (there is also another “view blog (in new window)” link further down, but this one will open the blog again and you will have it open twice on your screen)

Hope that helps! "

Ps: Any questions, please add a comment/reply to this post and Im sure Amanda can help you out!

Monday, November 16, 2009

This will only be our third get-together, it’s been lovely meeting a few of you and look forward to seeing some new faces next week. Our list of families is growing every week thanks to the wonderful support of all of you…..that bush telegraph is working well – keep it up.

Thursday 26th November in Busselton

Email or call me for the time and place, I've emailed those of you on my list, but if there are any newbies lurking Id love to hear from you :)

Thanks again to Amanda for all her help with the blog, there has been so much information added over the past couple of weeks. Feel free to post a comment, question, upload pics or just introduce yourself!

ALSO…..I had a call from the Autism Association today (thanks Candice!) and there will be an ‘Early Days Workshop’ held in Bunbury on Friday 11th December. To register your interest or further information, please call 1800 334 155 or Jo on 9284 0106.

This workshop is aimed at families going through, or who have recently gone through the diagnostic process. So Miranda, Kylie, Lee, Jacky, Elaine and Susan….this could be a good one for you! I actually attended one in June, just prior to Grace’s diagnosis – but would like to attend again if they will let me!

you know the tuff days? The ones we all have but no one ever wants to talk about because they worry people will know (Instead of just think) that you are a terrible mother.

You know those horrible guilty thoughts that you must be the mother from hell to not want to return home to your children after all everyone else seems to love their children.

Well I am here to tell you you are not horrible or a terrible mother. Nor are you going insane.

I would start questioning your sanity if there were days when you didn't feel like this. After all the average kids give you lots of little precious "I love you" moments that keep you understanding why it was you decided children were lovely things to have. And even then their mothers have days when they question their sanity.

If you are having one of those tuff days remember there are lots of other mums and dads out there feeling the same. Maybe not right now this minute but certainly close enough to remember.

Things you can do to make those tuff days more bearable.

Research> Learn all you can about how to help your childTrust> In yourself. You know this child better than anyone else on the planet (apart from your partner) so if your opinion and others differ go with your heart.You have a great chance of being right. Trusting my guts saved my sons life at a time when people were accusing me of having a mental illness becasue they could not see the distress my son was showing.Give> To yourself. We are often so busy giving to our kids, checking out the latest supports, spending money of the latest greatest unproven therapy that there is nothing left for us. Make sure you put aside a portion of your money to spend on you in whatever way gives you most pleasure. ( You know that carer's payment? It's not all to benefit the child. You deserve to get a portion of it as well)Is it time with your other half? Watching a movie, getting some decadent chocolates. It's great for your children to see you buying something for yourself instead of always buying for them. It teaches them to be aware of the needs of the people in their lives and helps them to become less focused on themselves (their hardest challenge) But best of all it fills you up with love so you have more to give your kids.

I promise you with absolute certainty that the greatest therapy you can give your child is a healthy sane Mum and Dad. Make sure you spend time together as a couple and support each other. We dont always need to ahve solutions given to us if we have had a hard day. Sometimes a cuddle and a "We'll get there one day at a time" will do so much for your relationship.

Contact Kalparrin through Princess Margaret Hospital. They have camps away for Mums, families and sometimes for dads.

It is a great organisation.

Oh and most important. When you have one of those days dont beat yourself up. They truely are a sign you are sane after all. :)

Monday, November 9, 2009

my girl used to suffer this every term around week 8 onward and in term 4 from week4.

Behaviour would go downhill, meltdowns increase, wanted behaviours that were well established would disappear, fights with school peers would flair up out of nowhere, increased level of negative comments from school, me going insane and booking into the insane asylum.

How is your child coping? Do they need to have some mental health days? It is possible to arrange for the school to get homework sent home for it to be completed at home. The school might not be aware of it but it can certainly be done.

Do what you can to stay sane, do something really special for yourself. You deserve it and keeping yourself sane will help your child.

Sunday, November 8, 2009

Almost forgot, a big happy 6th birthday to Jarivis for last Saturday! Here's a pic of Jarvis, his Sister Aslin and my Grace in the Ball pit at Country Life Farm. It was a brilliant venue for a kids party & a great time was had by all. Well done Tish - the kids had a ball (pardon the punn!!) .....I think its safe to say Jarvis' favorite pressie was the popcorn maker??

Hi everyone....big boys are at school, baby Henry is asleep and I have finally found some time to fiddle with the layout of the blog. Like it??

If anyone has any other information that would be great to include in the links section please let me know.

Does anyone have any ideas on how to help my ASD child cope with the disappointment of a friend changing schools? Jamie went to this boys birthday party a week ago and his mum and I had a really good chat about the boys......and we realised that the two of them would be good mates so were both going to encourage the friendship. Well this kid hasn't been at school since the party, turns up this morning and announces that he is changing schools!! What!! I so don't get why the mum carried on with the discussion about how good friends her boy and Jamie would be???? Anyway, Jamie doesn't know yet that this kid is leaving, but he will know at the end of the day.....ugghhm, meltdown approaching!

Good morning, Just got an email reminder about the on-line conference 'Autism 2009', cut n pasted below....I'm registered, and will pass on any stuff I find helpful, but if you have any specific questions....these are the worldwide experts - so a great chance to post questions if you register. Im off to Perth till Wednesday, catch you all when I get back. Have a great week Deb x

"Hello all,

Just a quick reminder that you can register right now for Autism2009, the unique Awares international online autism conference, at www.awares.org/conferences

This year's event - which Professor Simon Baron-Cohen has called "the finest online conference of its type on the planet" - is run once again by Adam Feinstein, editor of Awares, the pioneering website of Autism Cymru, Wales's national charity for autism. The conference opens on November 30 and runs for a week until December 7. The speakers' papers will be added to the conference site over the next few days.

After all these years of watching my kids I wonder if in fact they are a type of epileptic fit? My girl described it so well years ago when she said "It's like someone else comes in and takes over my body. I dont want to say these things I dont know where they come from they just come out.

For a long time my kids would not even know they had gone off their nut and would say "No I didn't do that at all you are making it up" That is why I wonder if they might not be related to a fit of some sort.

So what I have found is they are a cry for help. Your child is unable to realise that they are stressed by something and they are a warning to you that they are getting overloaded. You need to have a look at what is going on in their lives to see what might be the problem. Sometimes the triggers are not the cause but are simply telling you that something is going wrong in their life that they cant handle.

For example my girl had a monster meltdown in the supermarket when she was in year 7 superficially it was because I refused to give her extra money to spend. In reality it was her reaction to the extreme distress her brother was in over school issues.

Some times you can head the meltdowns off at the pass. If my girl is one track minding on something she has to be able to tell someone about it. This drives her brother absolutely frantic sometimes and he wont allow her to continue. If she does he will blow up. So I have to get my girl to come and tell me whatever it is she is needing to say. That seems to help.

Sometimes meltdowns seem to come out of nowhere. You cant find a reason for them on the day and nothing that you do makes a difference. In situations like this often a few days later you will find that they are ill, sometimes a bone may be broken (guilty of that one when ds was playing and hit his arm on my bedstead he broke it and I sent him to bed with panadol. Fantastic Mum hey? lol) once three days after a massive meltdown my guy developed an abscess in his scalp.

Othertimes you just cant get a handle on what is going on but a few weeks or months down the track you realise that oh my goodness your child has made a massive leap in learning somewhere.

things you as a parent need to know about meltdowns. They dont mean your child hates you. Poor thing is so overwhelmed that they cant even think. They have no chance of stopping and being able to say Hey Mum I didn't like you changing the plans on me.

Diary's can be an amazing tool in working out what the problem is. The more detailed the better.

On one of those really tuff days when it feels like this is never ever going to end remember that the person who your child is today is not the person they will be forever. I know it can seem like you struggle to get them to learn anything but they will learn it and I can guarantee that they will have better manners and social regard then half of the kids in their class.

Dont forget you have 20 years to teach them all they need to know. It is a falacy that kids will only learn with early intervention. They continue to learn into their adult hood and further.

On a bad day give yourself a break. You are doing a fabulous job make sure you reward yourself for it. You will be a better parent for it.

Friday, November 6, 2009

Deb,What a great site. As an EA I can use this even if I dont have access to boardmaker at school. I have used board maker and find it great and easy. This is wonderful I found so much that I can use. Keep finding more great sites. Thanks heaps.

Just drawing your attention to the ‘LINKS’ section on the right hand side of this page. Keep an eye out as we add new links when we find good ones!

The two I’ve put up so far are….

Speaking of Speech

“BOARDMAKER is an incredibly useful library of symbols and drawing program for creating no end of materials to support the communication, behavioral, and curricular needs of your students”

I’m planning to use some of these images etc for Grace’s social stories. If anyone has used boardmaker before, please let us know how it’s gone for you.

Aspergers Support WA

“This is a support group for parents, children, partners and siblings of those with Aspergers and High Functioning Autism. For those seeking professional help we will aim to provide comprehensive information and contact details of qualified professionals”

Just found this one today! Will email them & explore this further, maybe we can link up with them??

Wednesday, November 4, 2009

Well done on setting up this wonderful service for families in the SW. It has been much needed. To everyone else. Hi I am a Special Needs Teacher Assistant with a large interest in Autism. I look forward to being apart of your blog and maybe meet you at a meeting sometime. Thanks for the invite Deb.

I've just finished reading a really great book called 'The 5 languages of love' and although it was a bit 'American' and corny in parts, it really made alot of sense, so am starting on the path of getting beyond the mars/venus gap lol!!

A quick google search showed that up to 80% of couples with children on the spectrum end up splitting, add that to the 60% for those living the Fly in/out lifestyle, it appears we are stuffed with a 140% chance of going bust!

Ok, so it may not be that simple, and Im glass half-full kinda gal. So my resolution for this week is to start working towards a stronger relationship.

Hi all,I am Mum to two kids on the spectrum. DS is almost 17 and about to entre the workforce. He currently has a volunteer job and I am totally stoked. I have been homeschooling him for 3 1/2 years and was wondering if I would ever get him out into society again.

So I am full bottle on education and the problems our kids can face so if you are having troubles ask any questions and I am happy to help if I can. I have been involved in ASD support groups for well over 3 years because I have found the most support and knowledge comes from other people in the same situation. Although the supports availalbe do change with time and often the greatest help is having a place to come that has a heap of people who all have different knowledge.

DD is 15 and entering year 11 next year. Being term 4 this time of year is always a challenge and it is living up to the past but one day at a time we get there. Life is certainly far easier now then it was 3 years ago. The trouble with that of course is that professionals meeting dd for the first time dont always agree with me that she is on the spectrum. Sometimes I wonder why they suggest all this therapy and activities to us becuase they certainly dont seem to think they make any difference. Or else they would recognise the ASD is present despite the training *sigh*

Because my dear lad is about to enter the work force I am able to get back into work myself. Having years of experience with horses, and autism/aspergers I am starting a business running horse riding lessons for kids with special needs in Busselton. It's fun and hectic at the moment because I am trying to get into the New Enterprise Incentive Scheme so there is lots of paperwork and learning about business stuff.

I hope to catch up with you all at the meetings if I can at all. It's nice to meet new faces who understand :)

Amanda, Thanks SO much for your offer to help with this blog, look forward to seeing your magic!

We had some great news yesterday, Grace's application for schools-plus funding for an EA for next year has been approved!!! So we have been allocated the same as this year, which I think works out to about 14hrs p/week. Yaaaaaay!

Also met with our OT who has finalised Grace's sensory profile, she was brilliant and so very helpful with ideas for home & school.

Have sent out invites to join this blog to all of you on my mailing list, please join in and introduce yourselves when you have time.

Monday, November 2, 2009

Hi everyone, Amanda here....mum to Jamie, aged 8, diagnosis high functioning autism. Thanks to Deb for accepting my offer to help run this blog. It's late in the evening at the moment and I need to feed the baby and then get Jamie from scouts, so sometime in the next couple of days I will start adding some of my ideas and links etc to the blog